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I need some confidence....anyone have any to give me? Making the BIG decision!

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  • #16
    my heart goes out to you

    Susan,

    We have spoken before. Maybe my story will help you. My lumbar curve is 80 degrees. I have lost 1 inch in height this year alone. My predicament is that I am not in alot of pain, but when it comes, watch out. Over the past few years I have had different issues with pain in my left leg and most of the pain has gone away with physical therapy, but I noticed that my curve was getting worse.

    So off to a doctor in Boston I went. My doctor told me it was my decision whether to have the surgery, which he said he could correct about 50 percent. he also informed me that if I do not have the surgery, there is a good chance that by the time I am in my 70's I will have so much leg pain that I may be bedridden. No that's not for me. I have two very small grandchildren I want to play with and watch grow up.

    Even though in my mind I knew that surgery was the right thing to do, I was still ambivalent. Then I talked to someone who had the surgery when she was around 62 (I'll be close to 63). She is now around 70 and wall papers, gardens and plays with her grandchildren. Now I go to my lawyer to be sure that all my legal papers are in order (just being overly cautious). She said to me, get the surgery before it's too late. Her aunt waited until she was in so much pain that she couldn't stand it, but it was too late and the doctors could not do anything for her.

    That was the final straw for me to be sure that even though I won't be able to bend and twist I need to have the surgery. What still concerns me is, yes, how will I do everything. My ride to work is well over an hour and I sit at a desk all day. How will I turn to get a piece of paper or a pencil. How do I file papers in the drawer that it hurts to bend over now. Well, the answer is, you'll figure that out when the time comes.

    I'm still very nervous about the surgery and start to shake while writing this, just thinking about the surgery date that is coming up shortly, but this is the hand that was dealt me and I must move on. Petrified I am to say the least, but I just keep in mind that I don't want to be in bed for the rest of my life.

    I have your e-mail address. If you would like, I will send you the journal the 70 year old woman sent to me. It helped me make up my mind.

    Libby

    Comment


    • #17
      Originally posted by Wish2bstraight View Post
      Susan,

      We have spoken before. Maybe my story will help you. My lumbar curve is 80 degrees. I have lost 1 inch in height this year alone. My predicament is that I am not in alot of pain, but when it comes, watch out. Over the past few years I have had different issues with pain in my left leg and most of the pain has gone away with physical therapy, but I noticed that my curve was getting worse.

      So off to a doctor in Boston I went. My doctor told me it was my decision whether to have the surgery, which he said he could correct about 50 percent. he also informed me that if I do not have the surgery, there is a good chance that by the time I am in my 70's I will have so much leg pain that I may be bedridden. No that's not for me. I have two very small grandchildren I want to play with and watch grow up.

      Even though in my mind I knew that surgery was the right thing to do, I was still ambivalent. Then I talked to someone who had the surgery when she was around 62 (I'll be close to 63). She is now around 70 and wall papers, gardens and plays with her grandchildren. Now I go to my lawyer to be sure that all my legal papers are in order (just being overly cautious). She said to me, get the surgery before it's too late. Her aunt waited until she was in so much pain that she couldn't stand it, but it was too late and the doctors could not do anything for her.

      That was the final straw for me to be sure that even though I won't be able to bend and twist I need to have the surgery. What still concerns me is, yes, how will I do everything. My ride to work is well over an hour and I sit at a desk all day. How will I turn to get a piece of paper or a pencil. How do I file papers in the drawer that it hurts to bend over now. Well, the answer is, you'll figure that out when the time comes.

      I'm still very nervous about the surgery and start to shake while writing this, just thinking about the surgery date that is coming up shortly, but this is the hand that was dealt me and I must move on. Petrified I am to say the least, but I just keep in mind that I don't want to be in bed for the rest of my life.

      I have your e-mail address. If you would like, I will send you the journal the 70 year old woman sent to me. It helped me make up my mind.

      Libby
      I would love the journal, thanks! I am very close to deciding to have surgery. I have a second opinion lined up for January 7th in San Francisco where my son and his wife and kids live. Having surgery and recovery there is a real option. Bothof them are graduates of UCSF as Family nurse Practitioners. I had a corticosteroid inj yesterday and now can function instead of sitting or lying on the floor after 4-5 minutes. Thanks for your story. Anyone that is not ambivalent is NUTS! It would be ideal if we could have a crystal ball and you have a twin and one has surgery and the other doesn't and you can see what happens. Well. we don't.....bummer. My inj lasts a few months, so I can go to Mexico with my husband in Jan. The prospect of traveling was depressing to me before the inj, and now I can stand and walk with very minimal pain.

      I will be 66 at the time of probable surgery. We will see what Dr. Hu says. I hope to have surgery [wow, I said it!] in late February-early March.

      You will be able to function at work with some changes. And that periodic pain will be in the past. I am semi-retired and do international health. I just returned from FIJI and Papua New Guinea for 3 months. With all of my procedures, I did well until the last week, which fortunately was in a beautiful hotel and I could just relax and jump in the pool. I know that I cannot live on these bandaid procedures. I am lucky to have a "pain time out".

      Again, thanks for writing. I am so much more self assured after reading everyone's responses. I have decided to just "Go for it" when I have said the final "yes" to surgery and just let go and have TRUST in my surgeon, whoever that is. I am going to take a picture of that surgeon and me and focus on that picture and say, "trust" anytime that I have doubts. I am very visual and I think that it will help. I also have some supportive comments gathered from others that I will send via return email if you would like. One is from Ed and while I cried when I read it, it really spoke to me.

      Take care and keep me posted on your progress.
      HUGS, Susan
      Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

      2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
      2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
      2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
      2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
      2018: Removal L4,5 screw
      2021: Removal T1 screw & rod

      Comment


      • #18
        Go for it!!!

        I am 62 soon to be 63. I used to live in the peninsula before moving to Baja California where medical availability is nill. Fortunately, my daughter got accepted at Washington University a private institution versus UCSF for her PHD in research. Both schools ranked 3rd in the nation for research.

        Long story short, I did a search for the top doctors on spinal scoliosis and found that Dr Bridwell is among the tops for years. I came, consulted, had insurance denied then re-considered, had my surgery on Nov 27, 2012.

        Out of the hospital for over a week+. Pain in hips and butt mainly but today the pain in the back where the muscles and nerves were cut have awoken.... I am speculating months of pains. However, either I did this or live in a wheelchair with constant pain.

        My curves were close to 90+ and it was time.

        I came to St Louis because both daughters are doing their PhDs in his state. One graduated from UC Berkeley and the other from UCLA. If they did not beg me to come here and be closer to them, I would without a doubt gone to UCSF.

        A medical teaching school is the best for this kind of surgery. They are constantly learning and improving their methods of success. For them it is the advancement of science versus the increase in the bank accounts. My dr Bridwell actually spoke to the xrays more than to me. He got very familiar with all aspects before starting the job.

        He knew that I had bone spurs in my bottom spine and had a neurologist in the OR if and when there was a problem which I did have a small dural tear.

        I can tell you that I do not regret this. I have been in pain, I have cried a lot so far, I have been reduced to asking for every little thing I need (and it has not been a month yet) but deep inside I know that I will be much better in 3,6, 12 months.

        I was curving one degree each year, top and bottom. But only the bottom curve got corrected, Dr B believes that the top curve will remain constant and be supported well by the fix in the lower curve. I don't feel stiff, I don't golf, play tennis, dance the tango etc so I don't think I will miss much. I haven't even bowled for years.

        I just want to be able to see and carry my grandchildren if my girls ever decide to dedicate time to romance (after their degrees). And, they both want to return to California.

        My advice is to do it and make sure you trust your doctor. I have heard great things about the team at UCSF but stay with the ones with the most experience in case something happens and they have seen it many times before. i.e. instead of some doctor with less experience and says: oops!

        Good luck. I wish I could be more positive but even sitting here writing this long answer is giving me inmense pain. Back to bed.

        You can also contact me separately via email or phone.
        Gardenia
        Baja California, Mexico & El Centro, Ca
        pre-surgery 75° and 89° - post ?
        Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
        T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

        Comment


        • #19
          Gardenia,
          You amaze me being able to communicate so soon after surgery. I was a mess for the first couple weeks and cried over everything from my kids using all my shampoo without asking to my husband not being able to find my frozen ice cups. But I think it was the mixture of the narcotics and my body being so exhausted because I hard such a hard time sleeping. Give it time it will pass and you will look back and laugh about the tears.

          Susan,
          Be careful with traveling, especially to Mexico. This is prime flu season and sometimes it takes a while to get over sickness. Not to mention traveling can be exhausting on the body. You want to be in the best physical condition that you can be prior to surgery.

          Tamena
          Diagnosed at age 12 with a double major curve

          Braced till age 15

          SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

          Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

          Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

          Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

          Comment


          • #20
            Susan,
            Your situation sounds so much like mine except I was not referred to a scoliosis specialist. Instead I was sent to a Neurosurgeon who told me he wouldn't touch me until I was in a wheelchair. I went home crying because I didn't want to ever be in a wheelchair. I didn't know what to do but I was desperate because I couldn't get any pain meds from the Doctors where I lived. I ended up going to a Chiropractor and spend over $5000.00 for traction therapy. It helped me for a time, but in about 6 months, I was back to square one. By the time I found my surgeon with the grace of God through my grown up godchild (she worked for Dupue) I was practically begging the Doctor to operate on me. Because of all the time lost, my spine collapsed even more and I was fortunate that Dr. Rand would even consider operating on me. Even though I still have pain, it is nothing like before surgery and I can do most anything I want to do now at the age of almost 73. Where would I be if I didn't have the surgery? The forbidden wheelchair of course. Yes, I was terrified of the surgery, but it was a very easy decision for me to make because I was terrified of the future if I didn't have the surgery.
            Anytime you want to talk to me on the telephone, just PM me and I will give you my phone number.
            Sincerely, Sally
            Diagnosed with severe lumbar scoliosis at age 65.
            Posterior Fusion L2-S1 on 12/4/2007. age 67
            Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
            Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
            New England Baptist Hospital, Boston, MA
            Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

            "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

            Comment


            • #21
              Susan

              Here are a few quotes and notes on confidence...

              “Courage is resistance to fear, mastery of fear, not absence of fear”. – Mark Twain

              “Optimism is the faith that leads to achievement, Nothing can be done without hope and confidence”- Helen Keller

              “We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face....we must do that which we think we cannot”-Eleanor Roosevelt
              ----------------------------------------------------------------------------------------------------------

              Flow your confidence from the inside out. Don’t hang it from the praise or accolades or reinforcement of others.

              Find your way forward. Confidence is not the absence of fear, but instead feeling the fear, and finding your way forward.

              See it in your mind’s-eye. Picture it. Visualize the confident you, and drink often from your fountain of images.

              Flip the switch. It’s like flipping a switch. It’s an emotional and mental state that you can drive from. You just might have to turn it on. For some, this means fake it till you make it. (I disagree with faking.....lets face it, be honest about it. Know your confidence, be sure)

              Don’t let critics limit you. Don’t let other people push your buttons, and know how to push your own.

              Sometimes you need the critic to tell you that you can’t, to figure out that you can … but don’t become reliant on reverse psychology to make up your mind.

              Know that confidence comes before competence. Don’t fall prey to the "if … then" trap (If I’m competent, then I’ll be confident.") Instead, anchor your confidence to the belief that you will get better with practice. Expect great things from yourself and make them happen.

              Let your confidence bloom as you do. You might be sapling where somebody else is a sage, but don’t let their shadow overshadow you. Simply recognize the stage you are at, and be confident in your ability to grow. Your capacity is a powerful thing.

              I hope this helps some....
              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #22
                I can relate

                Hi Susan, I just wanted to drop a line since I'm in the same boat. The personal advice given to me personally by a few folks who had the surgery was to wait as long as I possibly can -- especially if I can string together some good days without the fusion. The problem is, my "good days" are few and far between.

                I think it's the irreversibility of the decision that frightens me. The looming feeling of "what-if-my-results-are-worse-than-my-presurgical-state"?

                I've mentioned before that I'm a yoga teacher -- one of my students had a partial fusion when she was in her late teens -- and she still cries and cries about her loss of function. And she only has about 3/4 of the fusion I would. She's in excellent physical condition, but she's in pain much of the time. And she's only in her late-twenties. Her experience scares me.

                Folks here gave me the advice to speak to other people who got the surgery from my doctor. I think it's great advice. I'm going to ask for a list of names when I see him in a couple weeks. I want to see people in person, watch them move, ask questions face-to-face. Maybe that will help your decision making process, too?

                On the flip side of the coin, maybe you can speak to some people with large curves who opted NOT to get surgery. Really weigh both sides.

                I know my input is not so helpful, since I wavering just like you. But wanted to let you know I support you, you're not alone. It's this state of limbo that we're hanging in that feels very lonely.

                Hope you have a great day! -- Robyn

                Comment


                • #23
                  hi robyn
                  sending you a PM

                  jess

                  Comment


                  • #24
                    Originally posted by thatrobyno View Post
                    Hi Susan, I just wanted to drop a line since I'm in the same boat. The personal advice given to me personally by a few folks who had the surgery was to wait as long as I possibly can -- especially if I can string together some good days without the fusion. The problem is, my "good days" are few and far between.

                    I think it's the irreversibility of the decision that frightens me. The looming feeling of "what-if-my-results-are-worse-than-my-presurgical-state"?

                    I've mentioned before that I'm a yoga teacher -- one of my students had a partial fusion when she was in her late teens -- and she still cries and cries about her loss of function. And she only has about 3/4 of the fusion I would. She's in excellent physical condition, but she's in pain much of the time. And she's only in her late-twenties. Her experience scares me.

                    Folks here gave me the advice to speak to other people who got the surgery from my doctor. I think it's great advice. I'm going to ask for a list of names when I see him in a couple weeks. I want to see people in person, watch them move, ask questions face-to-face. Maybe that will help your decision making process, too?

                    On the flip side of the coin, maybe you can speak to some people with large curves who opted NOT to get surgery. Really weigh both sides.

                    I know my input is not so helpful, since I wavering just like you. But wanted to let you know I support you, you're not alone. It's this state of limbo that we're hanging in that feels very lonely.

                    Hope you have a great day! -- Robyn
                    We are struggling with the same issues. Whenever I have had a problem in the past, I could usually fix it by spending money, going back for more education, trying harder, intervening with some different conversations or interpersonal skills, or having a small surgery [ankle fractured] or just waiting it out....none of those are working. Instead of looking at ALL of the people that are so happy with their fusions, I think about the woman who is in a nursing facility who was in a coma, the teenager that died, the one with permanent foot drop, and the ones that post on the "I'm sorry that I had surgery" [I reread that last night....got to stop doing that!]. The person that started the thread about being unhappy for 20+ years and taking LOTS of drugs and is in such pain and it ruined his life is my biggest nightmare, that just plain scares me. You comment about the irreversability of the surgery also worries me alot. You can't go back to the surgeon later and say, "Just take this all out, it's not working for me."

                    I had lunch with Irina who has a BIG surgery scheduled on March 5/7. She seems to have gone past constantly thinking about the negatives because she has such faith in her surgeon and she can't continue to have any quality of life in the shape that she's in and will probably progress [Irina, hope that i spoke accurately for you!]. Irina ia a quite stunning, beautiful young woman [40's, but looks like she's in her early 30s] who has thought this whole thing out, and after her surgery will not have her back hump and will be even more gorgeous than she is curently. She told me that she will not be wearing any more pants after surgery, just beautiful dresses. She was very inspiring for me. She also wrote on a thread how she loves to travel with her husband, but she is so limited by pain and needing to lie or sit down. She really spoke to my needs and concerns. She did meet up with a woman who had a full fusion and she watched her move. The woman dropped her napkin on the floor and got up, bent at the knees and simply picked it up. She said that the woman looked so normal in what she did. Irina demonstrated the moves [in the restaurant] that the woman used and I was impressed! I think that that will help me and I that her so much so giving me such a boost. When she talked, I held back tears so many times as she touched on my fears and worries and hopes that are in my heart.

                    Right now I am in a honeymoon period as far as my back goes. A week ago, I was on the couch with my heating pad taking pain killing analgesics because my R L4 nerve incapacitated me so. I couldn't stand for more than 4-5 minutes and I sat or laid on the floor in the supermarket, waiting for an airplane to load, waiting in line at the OHSU Pharmacy for more drugs [the lady behind me offered to hold my place in line while I have a seat 20 feet away], in the Y waiting for my daughter in law [someone tapped me on the shoulder while I was lying, huddled up on the floor and asked if she should call 911] and other times when I simply sat down on the floor against a wall wherever I was if there were no seats [few seats are comfortable for me]. I am 66 and have no shame and just sit or lay down when I am in severe pain and try to find the ice bag that I carry with me. I pop some more pain pills [I carry those too]. ....But now I feel pretty good for the moment as I had another steroid inj a couple of days ago and all of the rest of my inj have not run out therapeutically yet. So, I am starting to forget laying on the floor at the Y and think, "Maybe I could do it without surgery", and then I remember night when I was laying on the sofa with cold packs crying in pain and if the surgeon had knocked on the door, I would have say, "Just fix my back now in the dining room table, I can't take it anymore".

                    So many wonderful people on this forum have inspired me and encouraged me....but the haunting doubts of the "what ifs" still whispers in my ear. I have been volunteering, doing medical work in Fiji for the past 3 months. Fortunately, all of those bandaid procedures kept me going [I even had a denervation the morning that I left for Fiji!]. The L4 pain didn't really kick in until my last week when I was in a resort resting. The people that I served asked me, "When are you coming back?" I would be emotionally torn by that question as part of me thought that I could come back in 2 years after recovery from my fusion [T3-Sacrum] and the other part of me thought, "Maybe never, as I will be in chronic pain". I just beat myself up so much and the tears are right there.

                    Thanks for your comments. You have allowed me to write down my fear and experiences and look at them. Sorry that this is so lengthy.

                    Where do you live? Coffee, sometime? Probably impossible! I would love to have dinner in my living room with you, Ed, Karen, Sally, Gayle, Linda, Gardenia [I could serve enchilandas!], Jennifer, Jane, Tamena, Evelyn, Libby, Robyn, and Irina and so many others that I cannot think about right now [since I cannot see the keyboard since I am crying from remembering and rethinking everything that I have just posted] and we could look at each other face to face and I could hear their stories in person and watch them move and accomodate their hardware. I'm such a dreamer!

                    I am struggling right now for a variety of reasons. I look forward to a second opinion on the 7th of January. HUGS to you, Susan
                    Last edited by susancook; 12-24-2012, 01:32 AM.
                    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                    2018: Removal L4,5 screw
                    2021: Removal T1 screw & rod

                    Comment


                    • #25
                      7th of January is not far off. I'm thinking that it will help make the decision for you. I hope he's the kind of person you can trust and put your faith in, then just let it all happen - and give up the struggle.
                      Surgery March 3, 2009 at almost 58, now 63.
                      Dr. Askin, Brisbane, Australia
                      T4-Pelvis, Posterior only
                      Osteotomies and Laminectomies
                      Was 68 degrees, now 22 and pain free

                      Comment


                      • #26
                        Originally posted by susancook View Post
                        12-19-2012, 11:19 PM#12
                        LindaRacine
                        Moderator

                        Join Date: Sep 2003Location: Northern CaliforniaPosts: 5,857

                        Most people with idiopathic scoliosis do not have coronal imbalance. It's relatively unusual, especially in kids, for someone with idiopathic scoliosis to not be balanced.


                        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
                        I'm sarcastic... what's your super power? --Unknown


                        ---------------------------------------------------------------------------------------------------------------------------------------------------
                        Surgery 2/10/93 A/P fusion T4-L3
                        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
                        http://www.scoliosislinks.com/AboutMe.htm



                        I just got back into my thread and found Linda's comment as #12, then I copied it and went back in and #12 is Confusedmom....my computer is doing strange things!

                        I started the thread about balance and I'm working to undertstand it by reading medical articles [my field os OB GYN, so it is tough trying to understand orthopedics that I learned in 1968!]

                        Susan...OK, I will take pictures of me in my swim suit for your comments...just don't put it on my Facebook page!
                        I think that my diagnosis is "Adult Onset Degenerative Scoliosis". I read somewhere that those of us that are older at the onset of scoliosis have either idiopathic or degenerative. I"m melting, I'm melting...that is whatever KIND or diagnosis that I have it's one where I lean markedly to the right [physically, not politically]....it looks pitiful....
                        Susan
                        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                        2018: Removal L4,5 screw
                        2021: Removal T1 screw & rod

                        Comment


                        • #27
                          Looking to TRUST and let go.....

                          Originally posted by JenniferG View Post
                          7th of January is not far off. I'm thinking that it will help make the decision for you. I hope he's the kind of person you can trust and put your faith in, then just let it all happen - and give up the struggle.
                          I have so much riding on that visit. According to what I have heard, I have 30 minutes [or less] with the doctor and I need to be examined, ask a few questions [yes, I have limited my questions to the most important], and to make up my mind about the person with whom I am going to give over my life. I believe that I need to decide soon as I am currently in a honeymoon phase of back treatments in that the corticosteroids are still working and the warranty on my denervations has not worn off [I think that they said that it usually is good for 1 to 1.5 years]. I have thought about this for a year now and almost said yes last year...but something wasn't right.

                          I have made a contract with myself that when I do "make the decision" to have the surgery, that I will let go and relax and put my faith 100% on the surgeon. At that point, I doubt that I will ask more questions and not ask the kind of hardware or give my opinion on levels to be fused or approach. I have decided to take a picture of me and the surgeon and to focus on that picture daily and say to myself, "I Trust You to take care of me". I am almost 66 and a half, so I am not getting any younger. I do not have osteoporosis, don't smoke, no diabetes, all other body systems are OK. In general, I am a very strong assertive person....funny, flexible, and a risk taker. I am a dreamer and very imaginative, generally an optimist.

                          You are so right that my appointment will help me. If I decide to have surgery with her [yes, a woman surgeon], I hope that I don't lose my composure and start crying in the appointment. I have so much emotion built up, so much riding on my hope for this visit. Maybe I should have a glass of wine before the visit to calm down....no, that isn't a good idea, forget that. Just lots of deep breaths and ohmmmmmm. My son [34, family nurse practitioner] is coming with me. Initially, he was very against the surgery, but recently when he saw my change in my posture and saw me laying on the ground in pain, I think he's less vehement against the surgery. He is a great kid, and I trust his opinion.

                          Still unsure how one let's go and transitions to have faith in the surgeon. Irina has done it, I will send her an email for some help. I think that I am honestly close to committing. Writing here and getting out my thoughts on paper [and crying over the computer as I did it] has been therapy for me. And I do see a therpist for depression, so I will talk to her. Some of my depression stems from my being angry about my scoliosis....which doesn't fit into my retirement life plan. I am also angry about how the recent pain management MD didn't do anything for 6 months. My brother says to me, "Susan when are you going to let go of that one?" I'm working on it.

                          WOW! Thanks to everyone that reads this and supports me. I REALLY need support and I am finding it here.
                          Gratefully, Susan
                          Last edited by susancook; 12-23-2012, 12:23 AM.
                          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                          2018: Removal L4,5 screw
                          2021: Removal T1 screw & rod

                          Comment


                          • #28
                            Getting to mindset of surgery is the right answer

                            How did any of you transform from the "I'm afraid of surgery, I will have a bad outcome" to "Let go and TRUST". I feel that I am slowly collapsing and that at my age of 66, I will just start to progressively go down hill. My curve is stable from last year, but my coronal balance has greatly increased. I lean markedly to the right....when I look in the mirror, it's quite pitiful. I ruminate so much and worry about surgery and making a decision. I am my worst enemy. I need to come to peace with the surgery option and I wonder how others were able to let go and just go for it.

                            Thanks in advance for your help with my problem. Susan
                            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                            2018: Removal L4,5 screw
                            2021: Removal T1 screw & rod

                            Comment


                            • #29
                              I'd never had surgery in my life. I dreaded the thought that one day I might need surgery for some reason. Then suddenly I needed this huge surgery. Nobody could have been more fearful than I was. I went to pieces after being told I needed the surgery. Couldn't sleep or think properly. I got help from my GP. I'd never taken anti-anxiety meds before but they worked so well, I am now of the opinion, if you need medication, take it and make your life better. Suddenly I was able to sleep again and I could think constructively about the surgery. Gradually I gathered information about it, and worked on getting fit. Both these helped, but getting fit made me fearless. I know not everyone is fortunate enough to be able to get fit as I was. So, with medication, getting answers to my questions and getting fit, I came to terms with the need for surgery and the acceptance of what must happen.

                              It's probably different for each person, I doubt it's ever easy. But I think pain and desperation also drive us to the conclusion that we must have this surgery. I wasn't at that stage yet, so perhaps it was harder for me. But I got there in the end and so glad I did!
                              Surgery March 3, 2009 at almost 58, now 63.
                              Dr. Askin, Brisbane, Australia
                              T4-Pelvis, Posterior only
                              Osteotomies and Laminectomies
                              Was 68 degrees, now 22 and pain free

                              Comment


                              • #30
                                Originally posted by JenniferG View Post
                                I'd never had surgery in my life. I dreaded the thought that one day I might need surgery for some reason. Then suddenly I needed this huge surgery. Nobody could have been more fearful than I was. I went to pieces after being told I needed the surgery. Couldn't sleep or think properly. I got help from my GP. I'd never taken anti-anxiety meds before but they worked so well, I am now of the opinion, if you need medication, take it and make your life better. Suddenly I was able to sleep again and I could think constructively about the surgery. Gradually I gathered information about it, and worked on getting fit. Both these helped, but getting fit made me fearless. I know not everyone is fortunate enough to be able to get fit as I was. So, with medication, getting answers to my questions and getting fit, I came to terms with the need for surgery and the acceptance of what must happen.

                                It's probably different for each person, I doubt it's ever easy. But I think pain and desperation also drive us to the conclusion that we must have this surgery. I wasn't at that stage yet, so perhaps it was harder for me. But I got there in the end and so glad I did!
                                Thanks Jennifer for your thoughts. You are right, I need a get healthy plan! I will start an exercise program to strengthen my legs and try to find a water areobics class. Maybe that will help me feel more in control. I don't think that I need medicine, but I will go to a counselor and try to sort out my feelings and fears. Right now, I sleep OK, but maybe if I get closer to surgery, I might have some problems, so I will keep it in mind. I really think that I will feel more solid about my decision after my second opinion. I need to let go and trust that someone with more knowledge about my problem is in command. then I can stop second guessing. Thanks again for your support, Susan
                                Last edited by susancook; 12-24-2012, 05:17 AM.
                                Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                                2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                                2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                                2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                                2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                                2018: Removal L4,5 screw
                                2021: Removal T1 screw & rod

                                Comment

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